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Friday, August 30, 2013

I found this blog both infuriating and touching at the same time. I am infuriated that this mother had to deal with such ignorance. Not all medical conditions are visible from the outside, but that doesn't make them any less real. It certainly doesn't make this mother's life any less challenging. I'm also touched by her response to the note of someone so ignorant:

I urge everyone to be a human being, not a vigilante parking cop. You have no idea what other people go through until you walk a mile in their shoes. Being the parent of a child with a medical condition is challenging enough. Don't hurt their feelings on top of everything they already deal with.

Tuesday, August 27, 2013

I mentioned LB's recent check-up a few posts ago, but I wanted to mention one other thing of note that actually happened a week after his checkup.He had a reaction to the Measles, Mumps and Rubella (MMR) vaccine.The pediatrician warned us that he might spike a fever 7-10 days after the vaccine (which he actually didn’t do), but they didn’t say anything about any little marble-sized lumps that might start appearing on his head and neck.Thankfully, with my brain already prepared for a fever in 7-10 days, I thought to check the vaccine info sheet for other reactions before panicking about whether this might be tumors or cysts or other scary things and I saw that this lumpiness was one of the common reactions.It actually happens in 1 out of 75 children.

It was the weekend when it happened, so we called the pediatrician on Monday morning to ask if there was anything we should do.They wanted to see him, so I took him in for a quick visit and they confirmed that he has swollen lymph nodes all over his body (neck, head, armpits, groin) and those big lumps that we noticed were probably just the most pronounced. The lymph nodes have a role in immunity so the fact that they got all swollen after the vaccination likely means that he’s having a good immune response to the vaccine and will develop solid immunity to the MMR diseases. She reassured us that there was no reason to be concerned unless they become red, hot or uncomfortable which could indicate that they are infected (which she said is very uncommon for lymph nodes that are activated by vaccinations). The best thing to do is to ignore them and not prod at them too much because that will only prolong their immune response reaction. If they are still very pronounced in a month (right around when we’ll go back for his 18 month appointment anyway), it might be a reason for concern. They will likely just fade away between now and then, though.

The lumps don’t seem to bother LB at all, so that’s good and they seem to already be fading a bit, which is great.I just wish that these medical statistics would give the poor kid a bit of a break – 1 in 17,000 babies in the U.S. have MCADD, 1 in 75 kids can get lumpy reactions to the MMR vaccine…does that mean that LB’s now 1 in 1,275,000 kids with MCADD who gets a lumpy reaction to the MMR vaccine?Really now, let’s not do this to him!He’s too busy of a kid to have time for all of this.=)

Seriously, though - we definitely believe in vaccinating our children and that was the plan for our kiddos before we ever knew anything about MCADD. Even with this reaction, we still believe it is best to give our kids (especially our kid who ends up the hospital with possible life-threatening consequences when he's sick!) the best line of defense against disease. I know this is a hot topic and everyone is entitled to their own opinion on this, but from my point of view, vaccination helps not only your own kids, but also provides an extra line of defense for the weakest children in the community. Luckily, we have kids who can benefit directly from vaccinations, but some children legitimately cannot get them due to various health conditions. These families depend on the indirect protection their children get from these ugly diseases by living in a vaccinated community. I'm happy to know that having my kids vaccinated is helping protect those children, as well.

Sunday, August 25, 2013

LB threw up this morning. Fun stuff. I had just taken him for a haircut (which he sat very still and quietly for, I might add) and I was buckling him into his car seat when he started to gag a bit. I asked if he was ok and then he vomited. Three times. Once on himself and twice in projectile form into my car and my hair. He hasn't been sick so my suspicion was that maybe he had a piece of hair from his haircut in his throat and gagged on it enough that it made him throw up. Let's hope that's what it was. Having it be a flu or a virus would be much more of a worry.

I fetched the roll of paper towels out of the trunk and tried to clean the two of us up the best I could. I didn't bother with the car. That could wait for later. I called my husband on the way home to tell him what had happened and so that he would be prepared for us to come home covered in vomit with a car that needed to be cleaned and aired out. He agreed that he probably just had some hair in his throat and agreed to meet us in the driveway when we got home. When we arrived, my husband launched into the car and car seat cleaning, while I handled the cleaning of the boy (and myself -- my hair was pretty stinky by then).

Our plan for the day was to take LB for his haircut and then head out to a birthday party for my friend's boys at lunchtime. We had been looking forward to the party for awhile now and although I really wanted everyone to be able to go, we were worried about LB and whether this vomiting incident would repeat itself. Probably the worst place to be with a vomiting kid is at someone's birthday party, right? We decided to try to feed LB a good snack and see how he did. If he kept it down, we could probably go to the party. If he didn't, we talked through a couple scenarios of who would stay and who would go.

An hour later, he was fine. No more vomiting. No signs of illness whatsoever, so we decided to go to the party as a family and just keep a close eye on LB. We also decided to pack a hospital bag, just in case, so that we wouldn't have to backtrack all the way to our house if he did need to go to the hospital. Thankfully, he did great at the party and that hospital bag went unused. I'm glad we were prepared, but I'm also really glad this was just another "kid thing" as opposed to an "MCADD thing." We've been very fortunate that he's been so healthy lately!

Saturday, August 17, 2013

I’m a little embarrassed to admit this, but I somehow
managed to forget to take my MCADD kid in for his 15 month check-up.Oops!!I realized this as I was gearing up to make his 18 month appointments
with both the pediatrician and the metabolic clinic.I knew that metabolics wanted him back at 18
months.I missed that the pediatrician
needed to see him at 15 AND 18 months.I
blame the sleep deprivation…or the concussion I got at the end of May (long
story).In any event, the scheduler at
the pediatrician’s office was very nice about the whole thing and volunteered
that a lot of parents forget about the 15 month appointment.It only made me feel slightly better, but
whatever.The important thing is that we
got him in for his check-up and immunizations and he’ll be right back on track
with the pediatrician next month for his 18 month check-up, which is already scheduled!

At seventeen months, LB weighed in at 22 lbs, 4 oz (29th
percentile) and 32 1/4 inches tall (54th percentile).He’s always been our little guy, even though
I guess 29th and 54th percentile isn’t that little, but when we were used to
our older son never being lower than 90th percentile on anything, LB
is a bit of an adjustment.We’re
definitely seeing this in the hand-me-down clothes, too.A lot of them are falling right off LB.

One thing of note at his checkup was that the doctor noticed
a Still’s murmur with his heart.He
described it as an innocent murmur and insisted that it is nothing to be concerned about. Lots of children
have them.It is often easier to hear on
thinner children and LB was being really cooperative as they listened to his
heart, so they said it’s possible that he’s always had it and this is just the
first time they’ve heard it.It’s good
to note in his medical record at a time when he’s healthy because if it is
heard in the future at a time when he’s sick, they’ll know that it’s a
pre-existing thing.He will outgrow it
in time.

Saturday, August 10, 2013

I have a confession to make...my MCADD kid has terrible table manners! I blame myself. Really, it's all my fault. When my older (non-affected) son was this age and he would start throwing food off his plate or dropping his plate on the floor, I would just take it away. If he's playing with his food, he must not be hungry enough to eat it. Wipe off the child and set him loose to play. Issue closed. Food throwing situation solved in relatively short order.

With LB, I haven't been able to do that. Even if he's throwing his food or throwing his plate, cup, fork, etc., I haven't been simply wiping him up and setting him loose. I've been attempting to have him continue his meal because after all, he needs to eat, right? So, meal after meal, we are enduring chunks of food flying past our heads and utensils landing on our plates and oodles and oodles of food wasted on the dog (who may very well need to be put on a diet soon).

For the longest time, we tried to ignore it thinking no reaction from us would make him think food throwing wasn't much fun. Or we would take his plate away for a minute, remind him that we don't throw our food and then give it back to him only to have him go right back to throwing. Needless to say, mealtimes have gotten very stressful. It's a dangerous spiral -- he throws food because he isn't hungry, we want him to eat any morsel of food possible so we let him continue to throw food and then we get stressed that he's not eating the food, he's only throwing the food and we stack more food onto his plate in an attempt to get him to eat something, anything and he just keeps throwing food anyway.

Thankfully, if he doesn't eat a good dinner, we always have the bedtime snack to fall back on, but even then it's a matter of chasing him down and popping graham crackers in his mouth anytime he slips out of perpetual motion. He's constantly busy zooming through the house and really can't stop and be bothered to sit down and concentrate on eating.

We know that he's healthy and developing appropriately, so he must be getting plenty of calories, but this mealtime madness thing is really getting hard (and rather embarrassing when we eat in places other than our own home). Does anyone have any good tips for getting through it? We are all ears!

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About Our MCADD Journey

We didn't know much about newborn screening and we knew even less about metabolic disorders until our youngest son, "LB", was diagnosed with MCADD when he was three days old. We have a wonderful pediatrician and incredible metabolic specialists at the Colorado Children's Hospital who have educated us about his condition and taught us how to keep him safe. Keeping track of LB's food intake has become a natural part of our daily routine, but he is otherwise a completely normal and happy kid.

I started this blog to reassure other Moms (and Dads and Grandparents, Aunts, Uncles, Cousins, Friends, Neighbors, etc.) that MCADD isn't as scary as it may seem at first and to provide some insight into this condition as we learn more about it over the course of our son's life.

About Me

Nauseatingly optimistic and way too busy for my own good, I am hopelessly addicted to good books, soft blankets and warm cups of cocoa. I blog to tell my own story and keep up with the stories of my pals who are spread out across the world doing wonderful things. I am happily married to the man of my dreams and we have TWO handsome little boys along with a houseful of pets who provide endless hours of entertainment.

I have a Bachelor's degree in Communications and a Master's degree in Public Policy. Professionally, I am an alternative fuels strategist/junkie/advocate, but newborn screening advocacy is a personal 24/7 mission because I'll never be able to fully express my gratitude for how newborn screening saved my baby's life.